Wednesday, August 26, 2009

Dr. Nice Guy

We visited Dr. Nice Guy tonight, Elijah's rehabilitation medicine doctor (also known as a physiatrist). The doc was pleased to see that Elijah continues to improve in his motor skills.

We're looking into getting new hand splints for Elijah. He has outgrown his old ones and since he still keeps his thumbs abducted, the doc thinks new braces might help him as he's now exploring his world more. We asked again about Surestep and Dr. Nice Guy doesn't think Elijah needs any foot orthotics. "His feet look better than my six-year-old's feet!" he said.

We had read in Elijah's medical records that Elijah has spastic quadriplegia cerebral palsy (spastic meaning the muscles are tight and quadriplegia meaning all four limbs are affected) and I wanted to know what Dr. Nice Guy thought. So, before we left I asked the doc the million dollar question: "What type of cerebral palsy does Elijah have?"

The doc chuckled. "That's a good question." He went on to describe the different types of cerebral palsy and how depending on which doctor we talked to, we'd probably get a different answer from each one. He mentioned that he rarely sees kids like Elijah –usually if they're walking as well as he is, their hands would be looser too. The doc thinks that Elijah's motor skills will continue to develop as he gets older, which is obviously great news.

He talked to us about a newer way of classifying cerebral palsy, called the Gross Motor Function Classification System (which we had heard of before). He mentioned that any doctor we talked to would agree that Elijah is a level one, which is the mildest form of cerebral palsy in that classification system. Dr. Nice Guy didn't want to commit to a specific CP type, so I guess Elijah is a level one and we'll leave it at that.

This is good news, so why am I not happy?

I have to say, I left the appointment with such mixed emotions. On one hand, the doc seemed to think that Elijah's motor skills will continue to develop so much so that at some point his cerebral palsy might not even be apparent (!!). Amazing, right? Awesome! Physically, he really is doing so, so well.

But (and isn't there always a but?), he foresees Elijah's disabilities as being more cognitive than physical. I suppose we've known this for awhile now, but it's not an easy pill to swallow. I'd be lying if I said that I'm okay with this. I'm not. What I wouldn't give to be able to have a conversation with my child, even if that meant Elijah told me how much he disliked me. Is it horrible for me to say that I'd trade in some physical stuff for ABC's and 123's? Does it make me a horrible parent to admit that? I've known for almost two years that anything Elijah was able to do would be a miracle. He is a miracle - no matter what. I'm mad at myself for even feeling sad about it.

The future is scary sometimes. I wonder what we'll be able to teach Elijah and what he'll be able to understand. I get weary thinking of school and how we'll probably have to fight for him to get him the things he needs. I worry about his seemingly fearless attitude and how he doesn't seem to grasp personal safety. And, yet, I feel incredibly stupid even saying these things. How can I be sad when we weren't sure he'd even be alive? How can I be sad when he's running around our backyard? Have I forgotten how far he has come? Have I forgotten the parents who would probably kill to be in our shoes?

It's at these times that I step back and remember what's important. What do I want for my child? I want him to be happy. And he is. He loves his life. I want him to know God. And I'll do my best to teach him. By no means am I giving up on him. Nothing is new here. Elijah acquired a significant brain injury at birth. That injury, for whatever reason, affected him more cognitively than it did physically. He has come a long way in the past two years. Who knows what he'll be doing in two more. Perhaps once he conquers all the physical stuff he'll be able to conquer the world. I'm a firm believer that with God, anything is possible and that prayers work. That, however, doesn't mean it isn't hard sometimes.

Tuesday, August 25, 2009

Birthday Boy (Lots of Photos)

Here is the two year old on his birthday...

A couple days later, we had a small party to celebrate Elijah's two-ness. He ate sloppy joes for the first time and like most little kids, he liked the wrapping paper more than his gifts...

Hmm, I wonder where Elijah and I get our silliness from?

I made dairy-free, egg-free, and gluten-free Elmo cupcakes for Elijah's birthday party (well... mostly "free" - the frosting most likely had some "hiden" gluten in it). The cupcake wasn't received quite as I had hoped...

But, after playing outside for a bit, Elijah was ready and willing to destroy his cupcake. Good times indeed.

Wednesday, August 19, 2009

Head Doctors and Evolution

The Head Docs
Elijah visited his neurosurgeon and plastic surgeon on Tuesday. If you recall, the last time we saw them was a year ago. Obviously, a lot has changed in Elijahland since that time (you know…crawling, walking, running, picking things up!).

The two docs separately examined his head and both came to the same conclusion: They have no reason to follow Elijah anymore. Elijah is doing well developmentally and his head is still (slowly) growing. If you haven't already figured this out…it's definitely a good thing when a doctor no longer wants to see you! As one of the docs said, "I don't think we need to torture you anymore by having you come here to see us."

Yes, Elijah has a small head. Yes, it is still misshapen. No, his skull most likely will never become completely round. No, the bones haven't fused. No, Elijah does not have craniosynistosis. Basically, there is nothing that these men can do for us. Their main reason for seeing Elijah was to make sure that his skull didn't fuse prematurely, which wouldn't give his brain a chance to grow. Thankfully, that hasn't happened.

There is a surgery they could perform to pull the skeletal bones forward to try to give Elijah's head a rounder appearance. The surgery sounds pretty complicated, the docs wouldn't recommend it, and the neurosurgeon said he didn't think it would change Elijah's appearance much anyway. I could never see Andy and I opting for a surgery that was purely cosmetic, so it's not something we would even consider.

So, after being followed by these docs for two years, we no longer have to see them. Two less doctors to see is certainly reason to celebrate!

The Evolution of Head Shape
Seeing these docs made me think about how Elijah's head has changed over the past two years. What better way to show this change than in pictures? Here's a photo journey in head shape...

I couldn't bring myself to post a picture from the night Elijah was born. His head was so swollen and misshapen - looking at it made me want to cry. Obviously this is when the head shape issue began, but I just can't bear to look at it.

At 1.5 months, his head ridge was pretty prominent. Funny, but at the time I hardly noticed it. I knew it was there, of course, but when I looked at him, I didn't see it.

At 8 months, the center of his skull had filled out a bit and had fused. The side sutures remained open and left him with two dents.

By 15 months, Elijah's hair was mostly covering up his head shape. The dents seemed less prominent, but it's hard to tell if it's just the hair covering it up.

At two, Elijah has a good head of hair which covers up his head shape. I am thankful for this because I'd prefer others to see him (and therefore treat him) as any other two year old... If you look closely, however, you can still see the ridge.

Of course, we had hoped that his head would've rounded out by this point. But in the big scheme of things, head shape doesn't seem like that big of a deal. When I look at these pictures, all I see is cute.

Friday, August 14, 2009

Two Today and Stats

Happy Birthday Elijah!

Tonight, at 10:58 pm, Elijah will have been on this earth for officially two years. We love you little dude!

Stats for those of you who care about such things:
Last night, we had Elijah's 2-year check-up with his pediatrician and I wanted to fill you all in on Elijah's stats. It's official: Elijah is tall. He is three feet! What? Yes, THREE feet. That seems huge to me and it is...that puts him at the 88th percentile for height (no wonder I have random people tell me he's tall). He's also getting chubbier and now weighs in at 25 lbs. 6 oz., which puts him at the 18th percentile - that's an improvement folks! Head circumference? Do I have to report that? Elijah's head is still growing, still slowly, still not on the charts (nor will it ever be unless God grants us a miracle). But, he's growing and progressing. Our doc said not to look at those numbers, but rather what Elijah is doing - which is a lot!

Thanks for reading about Elijah (and supporting us) over these pasts two years. I don't know where we'd all be without your prayers and support. I don't know much but I do know this: We have an awesome Father, wonderful family and friends (some of you that we've never even met in real life), and one really awesome TWO year old! Thanks everybody. We love you. (So milestones make me sentimental. So What?).

Happy Second Birthday Little Dude!!!!

Wednesday, August 12, 2009

Two in Two

I can't believe that our little man is going to be TWO in just TWO days!

Looking back over these last two years, I'm filled with awe. Elijah has accomplished so much in just this past year. He's learned to crawl, walk, jump, gallop, and run. He's learned to wave and shake his head no. He has picked things up from the floor. It may not seem amazing to some, but many of you do know - these are not minor feats. He has learned so much.

Yes, Elijah still has a lot of work to do. There are words I long to hear, things I hope he will one day be able to see, items he will be able to pick up. At times, the delays cloud my ability to see the progress. But, as I look back on these past two years I am nothing but amazed at this little man. If this past year is any indication, I'd say who knows what Elijah will do in the next year. He has learned so much.

Elijah, my boy, the sky is the limit...when are you going to teach me to fly? I have learned so much.

Thursday, August 6, 2009

The Appointment That Wasn't

We were supposed to have an appointment for Elijah today.

We drove 45 minutes to get to said appointment.

We walked up to the desk. "Hi this is Elijah," I said. "He's here to see Dr. So-and-so."

The lady looked a little worried. "Dr. So-and-so isn't here today," she said.

We stared at her blankly. "We had an appointment."

The lady types on her computer. "It says that you called back in May to reschedule. Let's see when your rescheduled appointment is...hmmm, I can't find another appointment."

I especially dislike when someone messes up and then blames it on you, i.e. saying we called to reschedule. We never called - if we did, don't you think we would've made another appointment?

"Um, we never called. We had an appointment for today. We drove 45 minutes to get here."

"I'd fit you in, but he's not here today."

"Well, what happened? Because we never called to reschedule and no one ever told us that we didn't have an appointment today."

"I don't know, but I'll talk to the scheduler who changed your appointment to try to find out what happened."

With that, we were back on the road heading home - an hour and a half round trip for nothing. We made another appointment, but now we'll have to wait until the end of the month - it was the earliest we could get in.

Andy called the corporate office on the way home to (nicely) express our frustration. Their notes said that they had notified the family (us) of a cancellation and advised us to make another appointment. That didn't happen...I have the confirmation of our appointment taped to our calendar. They canceled our appointment and forgot to tell us. Nice. It's not that big of a deal, I know it was just a mistake, an oversight, but extremely frustrating. We have appointments literally almost every day - it's pretty annoying to spend all that time in the car for absolutely no reason. Just the way it goes sometimes. Okay, vent over. :)

Wednesday, August 5, 2009

Stair Master

Elijah is learning how to walk down the stairs by himself! As you'll see in the video, he still needs a lot of supervision when it comes to the stairs, but he's definitely getting there.

The cool thing? I've been trying to teach him how to scoot down the stairs on his butt (since he was opposed to climbing down backwards) and he's figuring out how to walk down on his own. To me, that means he's problem solving.

The other thing it shows is just how opposed he is to using his hands. Most kids would learn how to walk down the stairs by holding onto a railing. Elijah has never held onto anything while going down the stairs other than our hands (which he's done a lot, so he's had lots of practice). It would be so much easier for him (and safer!) if he'd just hold onto something. I have to say, though, I love this kid's determination.
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